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cjvrooman

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After posting questions on the ACS Message Boards, a helpful lady provided me a link to this sight and indicated that perhaps the members of this forum could help. I'm going to definitely bookmark this site. My husband had a right upper lobectomy in March 2003 after 6 months of fighting with physicians to obtain a diagnosis for a mass found on a chest xray (diagnosis confirmed the day after Christmas-some present). He has a hard time dealing with his condition and has left all the research up to me - my life has become a living hell. The surgeon suggested a "low-dose" palliative chemo just as a precautionary treatment since he is presently cancer free, especially after confirming my opinion that a treatment with high dose chemo and radiation was too dangerous and extreme and not required (this was suggested by the first oncologist). The second oncologist again suggested the same basic treatment but without the radiation based on a recently completed clinical study that was presented at the yearly Oncology meeting. I have done extensive research on all the cancer drugs and the two suggested are noted as highly toxic and recommeded for advance cancer patients who cannot have surgery. Not our case. I requested "low dose" chemo and was looked at as if I was speaking a foreign language and informed that he had no idea what I was talking about. Extensive research about the "AMAS" blood test also seemed to be a good source for follow-up and possible early detection in the event of recurrence, but this request too was brushed off because of no knowledge of such a test. I am so exhausted fighting the so called "experts" and dealing with Cancer Centers who appear only interested in dollars and not treatment. We have been left to obtain all the information and obtain the blood test on our own, but the oncologist will be "happy" to followup based on the results that we provide him.

I have researched every site I can find on the internet trying to find a low dose chemo regimen but without success. Does anyone know of a link or have personal knowledge of same? I'm at my wits end. The stress is getting unbearable. We are planning a four day trip to California the end of August to celebrate the 30th wedding anniversary of some friends. Damn the cost - I opted for the ocean front room at a 4 star hotel and will be making an appointment at the spa for a nice massage. I need it bad!!

Sorry to go on for so long, but I could sure use some help in finding the information about low dose chemo regimens. Any help would be greatly appreciated. My husband has a network of male friends who are also cancer survivors that he can talk to, but I'm on my own and dealing with this solo.

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I don't have any answers to your questions, but I wanted to welcome you, and say sorry that you have to be here. This group is really knowledgable, I am sure someone can answer you question, or lead you in the right direction. The only low dose chemo I have ever heard of is the one they administer at Cancer Treatment Centers of America. They have a website, and you can read about it there. I hope this helps

Rana

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Please read my profile and you can see that my husband had both radiation and chemo after surgery.

The radiation was because he had some lymph node involvement, BUT the chemo is considered preventative since he has no evidence of disease.

He is getting 3 infusions of Taxotere, 1 every 3 weeks. The infusion only takes 1 hour. Is this low dose, I don't know. He has had 1 treatment and has not had very bad side effects - about 36 hours of chemo crud, felt a little nauseous. And then a week later a day of fatigue.

I think this is relatively low dose since it is a single drug, not a combo and since it seems most infusions take a lot longer to give which would seem to me they are getting more drug.

Hope this helps.

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Just to add my 2¢: I had 6 pre-surgery chemos (carbo & Taxol), given to boost the radiation that was going on at the same time. Each chemo session lasted about 5 hours, what with pre-meds and waiting in between. After surgery i was given 2 more chemos (the same carbo & Taxol) 3 weeks apart. My oncologist said that each one of those treat ment would be MORE than all 6 previous chemos! And guess what? They lasted the same amount of time as the previous ones. So. I don't think you can tell if you are getting a low dose by the time it takes. You will have to rely on what the doctor tells you. During the chemo, you could ask the nurses. They are very knowledgeable! JudyB

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hello and welcome----

what stage was he diagnosed with? I had a upper right lobectomy and was diagnosed at stage 1A---all the reports and consultations I had with oncos--all recommended no treatment for my stage---that research showed it did not help could only harm---

it depends upon the stage----I have a friend that was either stage 3B or 4

many Drs did not recommend that they do chemo until the cancer showed up again----it now showed up and they are doing chemo

regards Eileen

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Guest DaveG

I was originally Stage I. When I was diagnosed in 2001 the protocol then, was surgery, and if clean, no chemo after. Now I am a Stage IV and see that the protocol has changed where they are now recommending chemo for Stage I following surgery. Maybe if they had that protocol back then I wouldn't be a Stage IV now. Hard call.

I would recommend the chemo, just to be safe. This is a new protocol and has benn test very thorougly with good results. Go with the knowledge that protocols change and usually for the good.

This one Stage IV that really believes I wouldn't be here if they had given me chemo right after my first surgery.

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Hello and welcome to the group. Personally, I would insist on chemo following surgery. The cancer cells are so small as to not be visible and the chemo could help to insure that nothing was missed. We only get 1 shot at this and there's no going back. I believe you should hit it with everything you can right from the start and hold back nothing. Unless there is some reason that chemo can't be tolerated it would help to give me greater peace of mind that everything available had been used to kill the cancer. Finding a doctor that you trust is so important. Of course you have to do what you and your husband are comfortable with. The stress can wear you down, I hope that you are taking care of yourself and that you will enjoy your trip together and be able to put this aside for a short time. A massage sounds great!

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Hello cjvrowoman (you haven't told us your name, and I feel as though I have to call you something)

I can't offer you much, other than to maybe give you a little hope. I had my left lung removed 26 years ago with no follow up treatment. Although, if I had an option - if there was chemo available after my surgery- I, like Dave G. would have gone for it, to be on the safe side. But it does look as though my surgeon's decision to remove my entire lung instead of the upper lobe as planned, was the right one. Take care, and keep us informed,

David P.

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Guest pepperpike

Hi,

I have Stage IIIB NSCLC. I was given Carbo and Taxotere...4 cycles prior to surgery....to reduce the tumor size.....left lung removed 3/11/03 and followed with 4 more chemo treatments and 30 days of radiation. They called the chemo after surgery "low dose".... In looking at my records, I was receiving 375 mg of carbo each treatment prior to surgery and 228 mg each treatment after surgery. The carbo/taxotere combo is very successful now.....I just think the amount of carbo received determines high vs low dose.

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At the national convention of Onocologists just recently they are recommending chemo after even Stage 1 surgery with "no" lymph node involvement or metastasis. The reason being as said above "micrometastasis" that the pathologist would not be able to see. A significant number of these people months later are found with tumors again. I would not rule out chemo without careful thought. Having the cancer "come back" is difficult to deal with, although many of us have had to. I have been fortunate enough to go to our local " Thoracic Onocology Consortium" meetings they hold here in Minneapolis twice a year. We have a doctor doing research at the University of Minnesota , trying to develop a blood , tissue test , to accurately identify people with micrometasasis. I hope he is successful because then we will know for sure who those people are who need chemo. I asked him if it possibly could be used as a screening tool and after tilting his head he said perhaps ( but of course who wants to find out they have spreading lung cancer) Even that would be better than no screening test at all which is where we are now. These are difficult decision I know during such a stressfilled time . I wish you well. Keep us posted. Donna

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Thank all of you for your suggestions and words of encourgement. I still haven't given up hope and even called the Cancer Treatment Center of America and if accepted this would require us traveling from Florida to Oklahoma just for 3 days of tests to see what they would recommend. I too read to results presented at the Oncology meeting regarding chemo for Stage I and II and the final paragraph indicates that because of the high toxicity of the drugs perhaps a clinical trial with non-cytoxic drugs should be attempted. All my research has indicated that high dose chemo "may not be helpful" and could do more harm than good post-surgical resection for Stage I and II. The present oncologist suggested a clinical trial with Iressa which I thought was absurd since the website for Iressa clearly notes that this drug was intended for advance inoperable tumors (which is not our case). It also seemed absurd to put my husband in a clinical trial for 2 years and then find out he was only getting a plecebo. This would be a waste of 2 years. It appears that there is no clear resolution or answers since they don't have one yet and suggest these clinical trials because they are "fishing" for answers. I have received some information for other NSCLC Stage II survivors who have provided their present followup treatment course and it seems I am going in the right direction. I just have to find a doctor who will think "outside of the box" without blinders. I want to leave the extreme treatment as a last resort when we have no other options. Right now, he is cancer free and I just went to give him a chance to stay that way without killing him with the treatment. Keep the faith and God Bless all of you.

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The problem with leaving the big guns until later stages is that we are rarely as physically strong as we were back when the tumor was limited in size, or was removed through surgery.

I've been surviving my lung cancer for the past 4 years, and I can tell you that I believe that had I been given aggressive treatment when first diagnosed (aggressive chemo after the first, or even the second lung surgeries) I believe I would still be in remission, instead of recovering from a complication from having my whole lung removed AFTER the cancer was allowed to spread from the single spot of recurrence. I would go for the chemo...and I would do so as quickly as possible.

Fay A. There is a recent article on MedLine called "The Face of Cancer" by John G. Scott, MD written in conjunction with his patient, a 4 year survivor of NSCLC who had the lung tumor and a brain met who chose to undergo aggressive treatment. Read it...

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I would have to agree with Dave and the others, find an Onc that will do chemo NOW, be as agressive as possible, try to beat it completely the first time.

I was Stage IV at diagnosis, due to an adrenal met, which actually caused the pain that indicated I had a problem. I had my right kidney and adrenal removed, followed 6 weeks later by a right upper lobectomy, all nodes taken in both surgeries were clean and I was declared NED. I tried to get chemo, but three different oncologists refused, saying it was of no use and that I was potentially cured. Well 6 months later I had cancer in lymph nodes in my chest, chemo (Gemzar/Carbo) stabilized them. Now another year later I just finished a course of Taxotere for a mass and lymph nodes in my abdomen, the chemo doesn't appear to have worked this time and we are now going to explore other options, after I take a couple weeks to recover.

I firmly believe that had I gotten chemo before it became visible again the first time that I might really have been cured.

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Guest pepperpike

I agree with the others, take the most aggressive course NOW..... Never ever regret taking a treatment. I can tell you that reading the information on chemo is dangerous to your mental health. Much of that information applies to exceptions...not the rule. Necessary for legal reasons. I have had 14 sessions of carboplatin and taxotere and am recovering just fine. The only side effect has been fatigue. I was to take more chemo, but just became too weak and the doctors and I agreed to listen to my body. I'm recovering from 6 months of treatment, but very happy in the knowledge that the doctor's have done a very aggressive course of treatment. The odds are not good with this cancer. The cells are smart, know how to survive and come back. Be aggressive. Too many have had reoccurrances that are fatal. I hope you listen to the folks at Cancer Center of America....reported to be one of the best clinics in the US. If I have a reoccurrance, I'll be there.

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